MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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oldblue's picture
Replies 1
Last reply 9/30/2014 - 1:04pm
Replies by: Anonymous

 

Hi all,

I recently read the avemar research and was surprised that most of it was never followed up with larger studies or trials over longer time in the west. Most fowhat I read came from Russia or Hungary. Maybe there is more research but I haven't found it.

I'm also awareof a clinical trial currently recruiting for high dose vitamin D supplements for those at stage 3 - at least it is in Australia.

Is anyone aware of any other alternative options out there? I am interested in it as an adjunct to more formal treatment regimens as long as it doesn't interfere with them.

Or,is there a website that has them?

Thank you,

Nigel.

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kalisama's picture
Replies 1
Last reply 9/30/2014 - 1:28pm
Replies by: Teochasse

Stage IV, BRAF positive, active mets in brain and breast.

Started on Zelbarof for nearly a year after brain excision and gamma knife. Developed a met in shoulder and was switched to Mek/Taf as soon as it was approved. New mets in brain and in dermal lining of brain, as well as in left breast. Gamma knife has not shown to have worked on brain lesions a month ago.

Monday I begin Ipi with my only goal to get to Keytruda. I have never felt good about Yurvoy option and still do not. I have a colostomy resulting from divriticulitis, which I feel should exclude me from the Ipi prerequisite as clearly I have a sensitive colon.

Merck has refused me off label use of Keytruda, so my only choice is to start Yurvoy. I will be receiving 5 gamma knife treatments on my breast as well, starting after the Ipi infusion Monday and once per day going through Friday.

I'm posting this because I'm scared of Yervoy. Can't say why, it's just a feeling in my gut. If those of you who have done Ipi can share some of your experiences with me that I might find helpful, I'd really appreciate it. I'm somewhat new to this forum but have found nothing but wisdom here, and feel that y'all are the only ones in my world who are not speaking Swahili.

Thank you in advance for your time,
kali

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AusLoveBug's picture
Replies 1
Last reply 9/30/2014 - 10:38am
Replies by: Janner

Hi all,

I'm a 36y.o. Female from Australia. I know I've been very lucky in catching my Melanoma early, I was just hoping someone could put my biopsy report into layman terms for me, for my own understanding. I have to have more skin cut out tomorrow to be certain it's all gone. The part that worries me is that it seems like it was right on the margin & things I've read online say things like, when too close to the margin, cells can be pushed further in. I refuse to google anymore as I'll just make myself paranoid.

My story goes: I noticed a mole on the back of my shoulder that I just couldn't recall noticing before. I wasn't sure if it was new, or was something that was always there just incognito or if I'd seen it a million times but not actually paid attention. I went to the doc as I had a nagging feeling that something wasn't right but even my GP thought it was ok but suggested removing it & checking it anyway if I wanted to. Funnily enough, I said "Can you just take it out as even if it's ok now, it looks like the kind of thing that may be a problem later"... There was nothing overly suspicious looking, it was flat, 5x5mm, but it did have a paler colour in the middle - but that feeling kept nagging away so I trusted my instincts. Whew!

The microscopic examination: Level 1 superficial spreading in-situ melanoma. Nests of atypical epithelioid & spindled melanocytes at the dermal epidermal junction. There is lateral confluence of nests & there is confluent growth of single melanocytes along the junction extending along adnexal structures. There is limited upward drift. There is a dense superficial chronic inflammatory infiltrate, consistent with early regression. There is no dermal component. Lesion lies 0.2mm from the nearest lateral margin.

So I know it's only in the top layer of skin & all should be ok, at least for this one, I just want to know what all that stuff is explaining. Could someone help me?

 

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ScaredV's picture
Replies 3
Last reply 9/29/2014 - 10:37pm
Replies by: Lil0909, kathycmc

Hello all... My fiance got his SNB done today.  His melanoma was 1.2mm thick and on his jawline.  They removed one lymoh node from his collarbone area. 

How many lymph nodes are usually removed during a SNB? Is the fact that only one was aremoved a good thing? 

 

Now we wait and pray for results... The hardest part :( 

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braunerk's picture
Replies 3
Last reply 9/30/2014 - 11:25am
Replies by: evleye, Linny, DZnDef

So I finished Ipi and they did a scan with shows some growth in my tumor but I don't have any new tumors so both good and not so good news. I have something on my left ovary and now they are worried I might have ovarian cancer along with stage 4 melanoma. Can't see to catch a break. Anyone out there with a similiar problem? 
Thanks

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Scribe's picture
Replies 4
Last reply 9/29/2014 - 8:25pm
Replies by: Scribe, Janner

I realize that so many here have much more serious situations, but if someone wouldn't mind commenting on this, it would be much appreciated. My husband, who is 72 and has some cognition issues, was diagnosed in February with melanoma and had a wide exicision in March. He hasn't asked many questions of his doctor about this. It has taken some time, but I was able to go with him today to the dermatologist and got a copy of the original pathology report. I realize there is probably nothing much to be concerned about, but since he is older and has a long history of other skin cancers, including some large sqamous, I just want to have a sense of this:

Melanoma in situ. Reviewed by dermapathologists. 2.0 x 1.5x 0.1 cm.  Poorly defined lateral margins and comprised of atypical melanocytes throughout all levels of the epidermis.

(Later, after the WLE, the plastic surgeon told him the biopsy report had said they had missed 1 cell.) 

Thanks in advance for your comments. 

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Doug-Pepper's picture
Replies 7
Last reply 9/29/2014 - 2:43pm

Routine chest x-ray showed something on lungs. Pet scan showed nodule in right lower lobe measuring 1.6 cm x 1.5 cm. & another smaller one.  Another ct scan scheduled for tomorrow on lungs &  brain also. We meet with a surgeon on Friday.Not sure if they will biopsy or remove. Any advice or prayers are greatly appreciated.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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oldblue's picture
Replies 2
Last reply 9/28/2014 - 6:06pm
Replies by: oldblue, RJoeyB

Thanks!

Nigel.

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oldblue's picture
Replies 2
Last reply 9/28/2014 - 5:40pm
Replies by: oldblue, Bubbles

Hi all,

I am a recent diagnosed stage 3b and have been offered this trial. Its 50:50 whether I get the drugs or the sugar pills (placebo). The drugs are the BRAF inhibitor dabrafenib and the MEK inhibitor trametnib.

I had two inguinal lymph nodes positive on SLNB in 07/2014. This was followed up by one positive lymph node on the complete lymph removal from my L groin in August.

They say this may 'mop up' any cells still in my body. Every oncologist or surgeon or trial professor has used the term 'mop up.' This apparently is the first time this drugs have been used for stage 3.

Is anyone on this trial - its multi centre - or does anyone have any views or expereinces of it?

I'd be grateful for anything you wish to share.

Thank you in advance.

Nigel.

PS I'm being treated in Sydney, Australia.

 

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oldblue's picture
Replies 11
Last reply 9/29/2014 - 12:18pm

My oncology surgeon told me that she felt that they were related. She estimated that over half her clients reported extreme or very high stress in the previous 12 months before a melanoma diagnosis.

My personal experience confirms her hunch. But, is there any research that people are aware of relating the two?

Thank you.

Nigel.

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kylez's picture
Replies 1
Last reply 9/28/2014 - 7:03pm
Replies by: Thandster

Has anybody heard from NYKaren? I haven't seen her post in awhile. A couple of months ago she was starting pembro after a long fight to get the treatment.

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ronald duclos's picture
Replies 30
Last reply 9/30/2014 - 11:40am

I have stage 3c melanoma and I am starting biochemo this friday.  I am wondering what to expect? Will my hair fall out? How much excersize will I be able to do (I like to hike and walk/run)...Most importantly, after the treatment, how long before I will be able to go back to work.

 

Any other info on side effects of the biochemo would be greatly appreciated.

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JerryfromFauq's picture
Replies 1
Last reply 9/27/2014 - 7:59pm
Replies by: BrianP

GSK and Pfizer combine melanoma drugs in new trial
Will investigate effects of adding palbociclib to Mekinist
The phase I/II trial will look at the effects of adding Pfizer's investigational drug palbociclib to treatment with GlaxoSmithKline's already-marketed MEK inhibitor Mekinist (trametinib), one of two GSK drugs for melanoma approved earlier this year.

Palbociclib is an oral inhibitor of cyclin-dependent kinases (CDK) 4 and 6 and one of Pfizer's top pipeline prospects, having been granted breakthrough status by the FDA in April as a treatment for breast cancer.

Trial 200344 is a dose-escalation, open-label study designed to determine the recommended combination regimen for trametinib plus palbociclib in patients with melanoma. It will also evaluate the effect of the combination on tumour biomarkers, safety and anti-cancer activity in patients with BRAFV600 wild type melanoma, including those with NRAS mutations.
http://www.pmlive.com/pharma_news/gsk_and_pfizer_combine_melanoma_drugs_in_new_trial_520905

 

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 3
Last reply 9/27/2014 - 7:52pm

Special prayer request for 10 AM Saturday 27 Sept 2014. For Christian Kennedy. 18 month baby with melanoma., and his family. Please all that can join in from wherever you are. {https://www.facebook.com/ChristiansSpecial Spots }

6 hours ago
To Christian's prayer warriors, Cincinnati Children's Hospital in Clifton has agreed to allow a gathering for prayer in their Chapel tomorrow morning at 10 am.

 

I'm me, not a statistic. Praying to not be one for years yet.

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